Friday, January 17, 2014

By Louise Kinross"Is he mentally retarded?" she asks.I am holding my 19-month-old son in my arms at a visit to a dental clinic in a children's hospital.I've been up all night giving Ben Ventolin masks for his asthma, and I'm still reeling from her previous questions, asked in a most pitiful tone."Will he ever walk?""Is he short for his age?"This student—training to be a pediatric dentist—knows that kids with Ben's genetic condition can have missing, fused or oddly-shaped teeth.But once she begins grilling me on my baby's height, ability to walk and mental faculties, my fears about Ben's teeth—about the possibility of him needing to wear full dentures as a kid—evaporate.I am stunned. How is this related to his teeth?"No," I say in reference to the mental retardation."Oh, well, I guess you wouldn't know that yet anyway!" she offers with a perky smile, as if to say: "You better not get your hopes up lady, and just who do you think you're kidding, anyway?"I feel like I've been dropped into traffic on an eight-lane highway.We've seen dozens of specialists about Ben's genetic deletion and I've got my head around the likely ways in which Ben will be affected. I've found a place where I can be okay with some kind of mild learning disability (no, not "mental retardation" or intellectual disability). I don't yet realize how challenging it will be to get Ben to walk and the degree to which his growth will be stunted. But now all of those "safe" parameters I've held in my vision of Ben's future have been ripped away. Warm saliva pools in my mouth. My heart pounds and something is pressing against my chest. The walls of my chest are caving in.Today was to be a simple visit to talk about Ben's teeth (he only has a couple). I was expecting a quick look in his mouth, maybe some x-rays.Instead, she takes it upon herself to conduct a detailed medical history using the most stigmatizing and value-laden language.After taking x-rays she tells me that Ben does indeed have "adult" teeth buried in his gums, and there's no need for any intervention at this point (or for dentures!).I maintain my pleasant demeanour and thank her profusely and make my way down into the dark, concrete belly of the hospital—where fear and grief and rage take hold.I am terrorized. I shake. I cry all the way home.I spend the rest of the day trying to convince myself that my bright, sociable, loving little boy is not "mentally retarded."How could this most terrible of stigmas befall my beloved son?When I was in grade school I was the kid who aced tests, scored a few grades ahead on standardized testing, and made up a "game" that involved timing which student could read book passages faster. My Dad—a great proponent of the value of education—liked to quiz me on where my friends "stood" in the class.By the time I got to university, there was no separation between "me" and "my marks." Without my marks, there was no me. Once I dropped a university course at the halfway point because I realized I was only going to get a B. In my world, if you couldn't get an A, it wasn't worth doing.I don't call anyone because I fear uttering the words "mental retardation." It's as if speaking the words could make them true. I need to maintain the iron-clad story that Ben is cognitively normal—a story I still believe to be true aside from the anxiety that this dentist has stirred up.I must protect my son against the judgment of others.How dare this uppity dentist imply that my son is "mentally retarded" when she knows nothing about him?A month ago Ben had a developmental assessment and we were told he was "fine cognitively."At one year, his pediatrician said "he doesn't appear to have global developmental delay.""There is no way this child has mental retardation," says my therapist, a family doctor who's observed Ben during my weekly counselling sessions for a year. Ben comes with me and sits in his car seat, babbling and playing with his Sesame St. characters.I rail against the dentist.D'Arcy is working the late shift and I call to tell him about the visit, but somehow the words lose their sting in translation. He responds in his usual way, which is to deny that there could be any validity to these prognoses."Louise, that's ridiculous. We know that's not true. Now don't get yourself all worked up about this."I put Ben to bed and pace around the house. I'm starting to learn that my usual modus operandi—calling friends to share what I'm going through with Ben—doesn't help. Many don't have kids, and those who do know nothing about having a child who is different. They tend to minimize what I'm going through or tell me how sorry they are.I've always cared too much about what other people think. Now I often choose to sit in the dark and let these terrors about my child run their course.But not tonight. I give in and call my good friend. I want her to tell me that there is no way on God's earth that Ben has "mental retardation." I want her to tell me that this dentist is crazy.Just whose side is she on, anyway?"Oh Weezie," my friend says genuinely. "That must have been terrible."But she doesn't offer an opinion on Ben's intelligence.Does she think Ben is "mentally retarded?"I don't dare ask.My friend begins to tell me about a work colleague who met a mother and her baby with Down syndrome. They were in a waiting room, and the friend began talking in baby talk—gooing and gaaing—with the baby. The mother, thinking she was in some way denigrating her daughter, took offence, giving her the evil eye and taking the baby away.I can't make out the point of this story, but I'm suddenly aware that for my friend and her colleague, who don't have children, the notion of a "mentally retarded" child is an interesting topic of discussion at lunch. It's about as far away from reality as Mars.And I say as much. "This is just a philosophical discussion for you. This is happening to me, this is something I'm going through, this is about my son who I love more than anything in the world."And my friend says: "Louise, this is happening to me too. I am going through this with you."And I tell her "No, you're not." And I start to cry. And I hang up.And then I scream. And it turns into sobs, big heavy, heaving, sobs.And I walk up and down the stairs. And I wonder what Ken, our neighbour on the other side of the semi-detached wall, is thinking. And what is happening to the picture of the happy little family we've been presenting to the neighbourhood.What am I going to do? What am I going to do?

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comments:

Oh Louise. My heart breaks for the younger you. I had an awful moment like that once, too. It was a meeting when we received the results of Nick's first real battery of tests and recommendation for preschool. The doctor sitting at the head of the table said that Nicholas would go to the "The preschool of the Ottawa Association for the Mentally Retarded." I was stunned but anger and desperation seeped in quickly. "But, but, he's so smart, he's..." And I'll always remember the look on the therapist's face - a look of miserable sympathy. "Could you give us, you know, some example of why you think so?" I knew I was beaten, at least for a while. It was so strange, we've had assessment of normal intelligence and assessments of profound delay. Who the hell knows? I love my boy. That, I know.

It really amazes me how much we do care about what others say and how much it affects our mood and outlook. It's too bad that we can't just make our own minds up about what we know and have our shield up to outside opinions but we're only human. My heart was with you in this post.

I stumbled on this blog on Pinterest and I can honestly say, I know the feeling. My 18 month old also has a rare genetic disorder with high rates of intellectual delay, learning disabilities, and autism. However, there are many people with the same disorder that are not delayed . It is so scary and so unfair. This dentists words were insensitive, but I wonder every day. She seems normal or is it too soon to tell? I know she is wonderful, so why does it matter? It is a form of grief, accepting these possibilities that we never imagined for our precious children. It can make you feel so alone. I still don't think most of my family understands the implications of her diagnosis.

My heart was in my throat throughout this piece, Louise, beating very hard. I am so moved by the writing, by the photo of beautiful, young you with your beautiful boy. This piece so resonated with me as another traveler on a similar road.

Would you consider talking to the dentist, or writing her, and sharing with her how her line of questioning made you feel, and suggesting how she can better handle patients in the future? Then call up your best memories of your child and your heart will heal again.Taking positive action will likely make you feel less helpless. - Anon, parent of a cognitively and behaviorally disabled child

Oh, that was truly a touching piece. That dentist had NO business talking about anything other his task at hand. Not her specialty, not something that she knew how to handle.

Do tell us when this feeling of terror subsided, and even as you found out that your child may have delays in areas that you were so hoping were "normal", and when it became a part of life, and that it was and is normal.

I was in the hospital recently, having babies. My 5 year old is mildly developmentally delayed, due to epilepsy, with a bigger delay in attention span.

Things I heard from assorted nurses, both in front of (my 5 year old!!) and not:"How bad is he?" (Response: "Um.. my son is really good. He's a very nice boy." "No, I mean, how bad is his intelligence?")"So how much retardation does he have?" (with my son sitting ONE FOOT AWAY)"How behind is he?""Oh, can he walk? He goes to school? That's nice that they can take him.""Is he going to be behind forever?" "How retarded is he?"

These are nurses.

Sometimes there are no words. And sometimes you just have to take a deep breath, hug your kid, and let it all just go.

People speak un-mindfully in front of children (perhaps especially in medical or school settings)even more frequently than to parents. I'd really like to see this change, and not via PC language but with a better understanding of the essence of politeness, which means thinking of the comfort of others before you open your mouth.

Thanks everyone for your kind comments. My son is almost 20, so this happened many years ago. The reason I decided to write about it was that I continue to hear similar stories TODAY, in 2014, where health professionals don't respect the humanity of the child and parent.

To answer a question, I did write to that dentist. I told her that because we had been seen in more than a dozen other departments at that hospital, that we had already provided all of my son's medical information, and it was unnecessary to put parents through that again (when we were there for something as specific as teeth).

The response I got was not receptive, and the person trotted out all of her professional qualifications as justification. I wrote to the head of the department and then had a long phone conversation with him. He was a good person. But he noted that whereas at a children's rehab hospital it's all "warm and fuzzy," at the acute-care hospital it's academic and clinical.

Of course "care" is about the whole person and the whole family, so if an overly clinical and academic approach is interfering with the family's experience of care, there's a problem.

I did have to face up to my son having an intellectual disability, but many years later,and I don't think this is something that can be properly diagnosed at a young age.

Through it all I learned that my own stereotypes about disability were wrong and could never alter the love I have for my son.

Louise, thank you so much for having the courage to open up and share your story. Your first post brought tears to my eyes and I could not believe that the dentist spoke to you like this. It was very inappropriate and unprofessional of her to say such things. Everyone needs to think before they speak in order to watch what they say. You have such a kind heart and you clearly love Ben to pieces. Louise you are so hard on yourself just like me. I am so glad you decided to express your feelings and concerns by writing the dentist. I feel for you and I cannot believe that dentist was not approachable. It amazes me how many people go through the same thing and do not bother saying anything about it.

I was taught that the person always comes before the disability because it does not matter if you have one or not. We all have strengths and weaknesses and we all learn differently. Everyone can bring something good to the table to assist others and make an impact on someone’s life. Through taking some classes as a DSW student, I have learnt that you cannot properly diagnose a child under the age of three because during this time they grow so quickly and everything changes. It is astonishing to see how far the terminology has come over the years, from “mentally retarded” to “intellectual disability.” You are so strong, keep loving your son to the fullest and do not allow words to put you down.

That dentist has the bedside manor of a wildebeest, and your feelings are completely valid. We have had similar experiences, where one specialist will take it upon him/herself to do a full medical/developmental writeup using archaic terminology.

One thing (from another blog) that has helped a little is a medical history sheet. We hand one to new doctors/nurses when they start to ask questions... Then our answer to each questions is to point at the sheet.

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